Monday, May 28, 2012

A difference a day makes

Today, in honor of remembering the brave men and women who have provided me with the ability to sit at my computer, typing whatever the heck I want, while nursing Calvin and deciding what I will do in 30 minutes from now, I will spend some time remembering.  After all, we all have days we sit looking at the clock thinking "This time yesterday (or 10 years ago) __________".

Sometimes looking back is plain old heart breaking.  Other times it is scary, or overwhelming, or amazing. Living life to the fullest puts us at great risk of strong emotions.  Quite frankly some of us come up with these protective mechanisms to shut down either the possibility of or the current existence of said emotions.

Two years and 1 day ago, I experienced emotions that aligned with those I felt when my Grandpa Ajer died.  Gut-wrenching sadness that hurt so bad I felt sick.  Those feelings where you finally fall asleep and proceed to toss and turn and wake up at the first hint of morning only to remember something is seriously wrong.  Then the hamster on the wheel gets up to speed and you remember.

For me it was Calvin's diagnosis of Down syndrome. (Yeah, I know, it could be worse but at the time, that was the worst.)

After I got home from work on the 27th I think I went about my normal (as normal as waiting for amnio results can be) routine.  Around 5:30 (I think, I might have to look back) Joe said there was a message from the genetic counselor.

"What?  You are just telling me this now?  This is a big deal!"  So, my heart pounding in my chest, I made the call to the woman.  She left her home number, which I thought meant a bad sign. She was heading out of town for Memorial Weekend and wanted to talk before she left.

Her life was continuing as normal.  I couldn't imagine normal.  Never again.  She so nonchalantly proceeded to tell me that my baby has Trisomy 21 (Down syndrome).  "Do you have any questions?"  I could not speak.  I handed the phone over to Joe.  Hoping he would make it go away.  Fix it.  Hear her say something different.  Nightmare.

My life became a nightmare.  I could not believe it.  I cried and cried.  Now my dad teases me for it.  But I quickly remind him that he sometimes said he would never want a child with special needs.

That night I said that to him.  He quietly replied "I didn't know what I was talking about" and he reclaims that to this day.  Because he is right, he didn't know.  And now he does.  And he is grateful.  And so am I, and all of Calvin's family and friends.

This is what I remember over Memorial Day weekend.  And I always will.  I will never forget and I do not want to.  I want to hold on to the pain because it carries me through my current glimmers of fear and pain.  Yes, they still shine now and then.  Like when I watched a 2.5 year old girl with Ds and she did not say words.  It scared the crap out of me.  For about 20 seconds until I gently reminded myself that any and all my fears have been unsubstantial and I am happy with Calvin just the way he is.  I have learned and maybe someday I will not be scared anymore.


  1. Oh, to hold onto the pain and those moments make us stronger in the end. They show us where we have come and give us hope for the road ahead. Thanks for sharing your story...

    I took a break between episodes to read your blog! Okay, must go watch another....:)

  2. Great post, Ilisa. Good reminders and I'm sure you WILL be happy with him just the way he is and will be. But those fearful moments still hit sometimes and that's OK.

  3. I don't think I realized our boys share the same birthday!